High dose IV Solumedrol therapy and results

[kimik1]

Hi Everyone,

I've been scanning the 40+pages of medication topics and can't find what I'm looking for.

I've just completed a 3 day, 1 gram per day, IV solumedrol course for my very first (lucky gal) relapse, and I'm wondering how long it takes to recover from it, what side effects you experieneced post infusion, and when I can expect to feel semi"normal" again.

I'm having extreme exhaustion, nausea, etc, and wondering how long it'll take to be back to regular?

Thanks for any input!

Kim

[Redwings]

Hi kimik:'
The worst of it should be over in about a week, but it might take another week after that to get back to "normal" as far as the steroid effects go. Different people get different side effects. I go through a phase where my neck and shoulders get very tender and my leg joints lock up suddenly. As the water weight comes off a few days after the last infusion, I have a couple of days where I pee a lot, including getting up every couple of hours at night. Also, after about a week I sometimes go through a couple of days where I'm... strangely flatulent. Sometimes I get mild acne, sometimes I don't. And for about two weeks I have occasional "waves" of withdrawal where I feel kind of fluish. But after about two weeks it's all over.

That's about how long it generally takes to get over the steroid effects. But the effects of the relapse itself might take even longer to resolve, and there's always a chance that some of them won't resolve completely. Time will tell.

[kimik1]

Hi kimik:'
The worst of it should be over in about a week, but it might take another week after that to get back to "normal" as far as the steroid effects go. Different people get different side effects. I go through a phase where my neck and shoulders get very tender and my leg joints lock up suddenly. As the water weight comes off a few days after the last infusion, I have a couple of days where I pee a lot, including getting up every couple of hours at night. Also, after about a week I sometimes go through a couple of days where I'm... strangely flatulent. Sometimes I get mild acne, sometimes I don't. And for about two weeks I have occasional "waves" of withdrawal where I feel kind of fluish. But after about two weeks it's all over.

That's about how long it generally takes to get over the steroid effects. But the effects of the relapse itself might take even longer to resolve, and there's always a chance that some of them won't resolve completely. Time will tell.

Thank you, so very, very much, for your thorough description of your experience coming down from the steroids. You've described so much of what I'm experiecing. Today, for the first time, I felt a glimpse of possible return to normalcy, though I'm still having the sweats, hot flashes, nausea and headaches some. It's better today, in spite of the fact that I worked all night last night and slept only 5 hours today. and it's hopeful to me to hear you describe almost exactly what i'm going through and to give me an idea of your experience of its duration and intensity.

interestingly, the symptoms of the MS relapse are resolving much more readily than I had anticipated. I still have some numbness/tingling in the left foot and lower leg (where it all started and from which it progressed rapidly), but that, too, is significantly diminished from before the IV steroids.

I guess overall, I'm glad I did the steroid treatment; with a worsening lesion in my thoracic spine, I felt like there wasn't time to play around and see how far it would progress, how debilitating it would become before seeking treatment.

Thanks again, Redwings, and take care.

[FL_Jhawk]

I have had just one Solumedrol treamtment so far, during the first week of January, and your question and the previous response got me to look back at things.

I remember feeling fatigued after the second day or so, and after a week or so didn't feel that the treatment was really helping with my symptoms. I was very tired and didn't go to work. However, about 2 weeks after the treatment, I did start to feel better, but until now I attributed that to my possibly having entered a relapsing phase and not to the Solumedrol.

However, now I wonder if the Solumedrol simply took two weeks to do its thing and that is why I feel better. I have no way of knowing at this point, but am glad the progressiveness I was experiecing has been at least delayed a bit. I go back again for another round of Solumedrol in a few days, and I have been on Betaserone for two weeks now and just upped to a 50% dose, so it will be interesting to see how my next week or two goes.

[kimik1]

Hey, FL_Jayhawk,

Glad to hear you're feeling better. Are you doing pulse steroid therapy right now, or still in a flare and they think you need more IV solumedrol? I just wondered, because I've not heard too much about doing a second round so close to the first, except for in the two cases mentioned above.

Yesterday was considerably better for me. I'm 5 days post-final infusion now, and though I worked nights two 12 hour shifts in a row Sunday and Monday nights, and only slept 5 and 3 hours following those two shifts, I felt decent yesterday, was able to enjoy a movie, family gathering and dinner for my partner's birthday and stayed up til 11:30 without feeling too bad. I'm still having waves of ... I guess flu-like symptoms, where I feel sweaty, have a headache, some nausea, etc, but it's much, much more tolerable and much less frequent and intense. The let down from the steroids definitely seems to be fading, and the MS symptoms which prompted the steroids are definitely better. I'm thankful overall, though hope it's a long time before I have to consider exacerbation treatment again.

Hope you do well on the increased Betaseron and next round of steroids!

Take care,
Kim

[pjsSissy70]

I refuse to do any steroids again. They made me mean. It did help get my legs in better working order but nothing else. It would make me tired after every dose I would go home and sleep all day. I never got that energy so many talk about. My neuro's not to happy to hear that I wont do them again, but hey, its my choice.

[FL_Jhawk]

I don't feel like I am in a flair. I mentioned this to the doctor but he wants me to continue with the 3-day, 1 gm each day, every 4 week treatment for a few more months regardless. I will pay better attention to the effects this next time. The betaserone does not seem to be bothering me too much, so most of whatever I feel should be mostly due to the steroids.

[Dawn42]

I did a 3 day steroid treatment about a month ago and was exhausted for about 10 days (including the treatment days and the taper down Prednisone days). For a few days, I could hardly walk or do anything, was groggy, a bit confused, and ached all over. I have had this happen before with these treatments and really hesitate to take them. The good part is that everytime that I have done it, it has stopped the relapse-sometimes immediately and other times over a month or two. So as much as I hate taking them, I've decided that so far it is worth it to give up a couple of weeks of life (which is what it feels like) to have improvement in my MS symptoms. I think it is a very individual choice. Hope you are feeling better.

[maximumlite]

My first steroid did'nt go well, it was the full strength and after the first day I felt great and than it seemed downhill after that for a couple of weeks but it did clear up the symptoms, I got an appt with my neuro a couple of days later and he told me I progressed to SP.

He wanted said he wanted to to do pulse steroids every 6 weeks but I said no because of how I felt, he than told me that he could change the dose that it can go from 500 to 1000 so I agreed to the 500. He said it was like trying to turn the titanic now.

So now it seems they have less side effects every time and 500 don't quite seem to do the trick so I'm going to ask him to move it up to 750 and from every 6 weeks to 4 or 5 weeks as I feel better and better after each round and think maybe the 750 will help more. I also don't do a taper dose. Good luck with any future treatments

[kimik1]

I refuse to do any steroids again. They made me mean. It did help get my legs in better working order but nothing else. It would make me tired after every dose I would go home and sleep all day. I never got that energy so many talk about. My neuro's not to happy to hear that I wont do them again, but hey, its my choice.

You're right, it's totally your choice!

I guess for me, I feel like the difficulties in the short term of dealing with side effects are far outweighed by the benefits of resolving the MS symptoms; I could be convinced without much convincing to do it again, though I must admit, the aftermath has been tremendously uncomfortable.

[kimik1]

I don't feel like I am in a flair. I mentioned this to the doctor but he wants me to continue with the 3-day, 1 gm each day, every 4 week treatment for a few more months regardless. I will pay better attention to the effects this next time. The betaserone does not seem to be bothering me too much, so most of whatever I feel should be mostly due to the steroids.

I guess that sounds like pulse therapy and they're having you do that for a few months while your body acclimates to the betaseron and it takes full effect.

[kimik1]

Dawn, I think I have adopted your philosophy, if it resolves the MS symptoms, and perhaps prevents further damage to the CNS by stopping the inflammation, I think I'll suffer the effects.

I am feeling better each day, though today, I'm quite tired. Partially, that can be explained by my crazy schedule this week, but the exhaustion is a little more profound than what I would normally experience in my crazy schedule life.

Thanks for your message, and good luck on the journey!

[LisaL77]

Thank you for this thread. I start my 5 day IV Monday, and I look forward to it. They are trying to get a nurse to come to my house for it, although I would gladly go to a site each day. I will try/do anything to relieve this.

[DonnaT521]

hi kimi... I have years of experience with the IV solu medrol followed by pred taper. Sometimes the side effects feel worse than what you are treating in the first place.

In the end though if it improves/restores some of your health the temporary annoyance is worth it. I tolerate the solu medrol better than the oral pred. The IV... heat flashes, headaches, rashes, constantly getting up to go to the bathroom.

Oral steroids.... ok.. excessive hunger, lots of fatigue followed by lots of false energy where you clean the entire house thinking u are feeling soooo much better only to suffer the aches and pains and crash later. My blood sugar varies from low to high. Lock your cabinets, refridgerator etc... chocolate and chips... anything salty is what I crave.

Replenish your potassium to deal with the muscle tightening spasms alot of people get. Mine are worst behind the knees/calves.

Some people do great, feel wonderful. I tend to get alot of side effects from the pred. For me, I know its gonna be a pain when I get them, but Im trying to preserve the vision in my one good eye.

Best of luck, rest,, stay well hydrated. If you have help at home and support... use it!

[ShannaB]

Hello,

I am new to this forum. I am 35 and have been living with MS since I was 19. I have been on Copaxone for over 5 years and have only had 3 major flare ups since then.

I recently had a BIG one. My left foot went completely numb and it traveled all the way up to my chest fairly fast. I went in and got 5 days of the IV Steriods. I have had these in the past and did not have much of a problem, besides wanting to eat anything and everything. I had the first 4 Tuesday - Friday and then the last the following Monday. I did okay through the first part of the week felt pretty energized. However, on Sunday I crashed! I have never had this happen the other two times. I could barely get out of bed. Just walking to the bathroom was like running a marathon. On top of the fatigue my body ached from head to toe. When I went back in on Monday the nurse who was hooking me up for my last dose said it can have that effect on some people.

The other two times I have gotten the steroids my relapse did an about face. This time however, I really do not feel any better at all. In fact it seems like it may have gotten worse. Should I be concerned? I know that they say there is not a hard/fast rule about this disease and unfortunately, I personally do not know anyone who has MS either that I can talk to. Doctors deal with this disease on a daily basis but they don't really know what it is like to live in a body that attacks itself for no reason.

Thanks for listening.
Shanna